Margaret Jones Conference on Cerebral Palsy Forum

Do you live in Southern California? Interested in trying out XBox technology for our CP kids? On Saturday, April 20, a family forum will be held at UCLA Santa Monica Medical Center where you will be able to play with this new technology. CP Family Network has been watching this project and provided support for the CP Research Foundation and UCLA to build this technology. Make your reservation soon so you don’t miss out on this great opportunity! 

http://www.cpfamilynetwork.org/blogs/margaret-jones-conference-on-cerebral-palsy-forum

Speech Therapy: Vital To Opening a Child’s World

By Lee Vander LoopCP Family Network Editor

Years ago, before the invention of augmentive communication devices, children who displayed an inability to communicate were assumed to suffer from severe developmental disabilities and treated as such.

Imagine the heartache and frustration of a child with sound cognitive abilities or mild to moderate learning disabilities trapped in their body as a result of their inability to communicate. Augmentive communication devices have opened doors and given new lives to many individuals, providing a means of speech communication for those who would otherwise have no means of expressing themselves and their needs. Thankfully, speech therapists and augmentive devices are common today and can help most any child communicate in some way with the world around him or her.

The Basics of Speech Therapy

Speech therapy is the treatment of communication disorders, regardless of the origin. Therapists that work in the field of communication disorders are known as speech therapists and speech-language pathologists. Therapy can consist of a series of exercises and drills to strengthen the muscles involved in speech, and improve oral motor skills needed for speech as well as swallowing. Speech therapy may also include sign language and the use of picture symbols or augmented and alternative communication devices.

Many children with cerebral palsy experience some level of challenge with speech. Their challenges could be due to cognitive delays as in the case of mental retardation and learning disorders, or may be the result of damage to the area of the brain that facilitates speech. The speech center of the brain is referred to as the Broca’s area and is located in the left side of the brain for right-handed and most left-handed people. Nerves from the Broca’s area lead to the neck and face and control movements of the tongue, lips, and jaw.

Children learn speech from parroting what they hear in their environment. Children with hearing disabilities also experience challenges with speech because they cannot clearly hear sounds they and those around them are making. Children with cerebral palsy and speech challenges also commonly suffer from feeding disorders. Therapy to strengthen speech muscles also greatly benefits eating and swallowing.

Issues Involving Specific Types of Diagnosis

With children diagnosed with spastic cerebral palsy, muscle tightness (hypertonia) may cause the tongue to constantly push up against the roof of the mouth, or palate, making speech all but impossible. Children diagnosed with hypotonia (low muscle tone) likewise would experience challenges with speech, since the muscles of the mouth and tongue work together to form sounds.

The tongue is the primary organ involved in speech. It is also the primary organ of taste, chewing and swallowing. In chewing, the tongue holds the food against the teeth; in swallowing, it moves the food back into the pharynx, and then into the esophagus when the pressure of the tongue closes the opening of the trachea, or windpipe. It also acts, together with the lips, teeth, and hard palate, to form word sounds. Early intervention in this area is vital to a child’s development.

What to Expect From Your Child’s Therapy/Therapist

Communication-Your child’s physical or speech therapist should be communicating openly with you as to what they are doing, what muscles they are working with and why they are taking the approach they have chosen. In the case of oral motor and swallowing skills, your child’s therapist should take every precaution to minimize the risk of choking and aspirating.

You should also expect the therapist to communicate with your child. Most young children are anxious and fearful with strangers. The therapist should be working and communicating with your child to win your child’s trust and confidence. Regardless of whether your child is capable of comprehension or capable of communication, the therapist should be treating your child with respect, patience and compassion. If you meet a therapist that treats your child like an OBJECT and not a human being, FIND ANOTHER THERAPIST!

Teaching-Your child’s therapist is not only working with your child, but should also be teaching you so that you can be consistent in your child’s care and contribute to help your child achieve and maintain goals.

Questions to Ask:

• Communication works both ways. You should be communicating any concerns and questions you have to the therapist. If necessary, keep a journal and note problems and challenges you see your child may be experiencing between therapy sessions.

• Ask the therapist what you can do between therapy sessions to help your child maintain their progress.

• Ask how often you should work with your child and the duration of each session.

• If your child has been prescribed adaptive or augmentive equipment, inquire as to how often you should use the equipment and the duration of each session.

Compassion and Patience-You have the right to expect compassion and patience from your child’s therapist. If you feel a therapist is being overly aggressive and seems to be traumatizing your child… STOP THEM. Effective therapy should not be traumatizing. This is contradictive and will result in your child relating therapy to pain.

Accountability-Your child’s therapist should have written goals. You should be provided with the results of the first assessment and goals the therapist hopes to achieve in addressing issues and challenges your child may be experiencing. The therapist should do periodic assessments and provide you with goals for improvement and notify you of progress or regression on a regular basis.

Coordination-You have the right to expect your child’s therapist to work with your child’s educators in developing your child’s Individual Education Program (IEP) and to be an active member of your child’s IEP team. In the case of a private physical therapist not associated with your child’s school, he or she should be communicating with your child’s teachers and involved in the IEP process to make sure everyone is working toward the same goals.

The therapist should also be coordinating and communicating with your primary care doctor about any needed adaptive equipment or communication devices, and should keep the doctor informed of your child’s progress or problems. If the therapist feels your child would benefit from a specific communication device or piece of adaptive equipment, it is their responsibility to communicate the need to the physician and to follow-up in obtaining the device.

Continuity of Care-You have the right to demand continuity of care for your child. This means that the same therapist works with and follows your child throughout the therapy process. Of course, this isn’t always possible, but it should be the goal of any agency you work for. If your therapist belongs to a group or agency and they are sending a different therapist with each session, find another agency. This is not acceptable.

Visit our website!

http://www.cpfamilynetwork.org

References

Scienceclarified.com

National Speech/Language Therapy Center

Health Science

Seizures and Cerebral Palsy

By Lee Vander Loop
CP Family Network Editor

As the parent of 4 grown children, one of whom has spastic quadrapalegia cerebral palsy, I feel like I’ve experienced my share of parental stress and fears of raising 4 children and dealing with the challenges of maintaining the best quality of life possible for my daughter with CP.

I’ve experienced the heart stopping moment of having my 3rd born not recognize me after a concussion and a multitude of other parental trials and worries, but nothing could prepare me for watching my daughter with cerebral palsy experience her first grand mal seizure also known as tonic-clonic seizures.

No training, literature, insight or experience can prepare you for the heart stopping, gut wrenching experience of watching your child suffer through a seizure. Whether it be the first seizure or 50th, they all feel like the first with the overwhelming sense of fear, helplessness and frustration that comes with the inability to stop your child’s suffering.

Not all children with cerebral palsy suffer from seizures, just as not all children who experience seizures or epilepsy have cerebral palsy. Additionally, although learning disabilities are common with children who experience seizures, not all children who suffer with seizures experience learning disabilities.

Depending on the severity of the trauma and cerebral injury, infants who suffer injury due to a birthing trauma may experience seizures immediately after birth. In the case of my daughter who suffered severe global cerebral insult as a result of neonatal asphyxia, she experienced 3 days of uncontrollable seizures immediately after birth.

What is a Seizure

Seizures differ, depending on which portion of the brain is involved. Nerve impulses are constantly being transmitted from brain cells and processed by neurotransmitters. Seizures occur as a result of abnormal and excessive discharges of nerve impulses originating from certain brain cells. Some of these excess impulses reach skeletal muscle fibers and trigger the violent contractions witnessed with a variety of seizures.

Groups of Seizures

Focal Seizures occur in only one part of the brain or one hemisphere. Generalized seizures occur in both hemispheres of the brain.

Atonic Seizures are characterized by sudden loss of muscle tone, particularly in the lower extremities, often resulting in falls which puts the individual at risk for head injury and other physical injuries.

Generalized Tonic-Clonic Seizures also known as generalized convulsions or grand mal seizures are commonly seen with cerebral palsy.

Tonic Seizures spread throughout the brain, and are normally followed by unconsciousness, twitching legs and arms, convulsive body movements, and loss of bladder control. A child may bite their tongue during such a seizure. The “tonic phase” of these seizures is characterized by sudden muscle contractions and rigidity (hypertonia/spasticity).

Clonic Seizures – Involves recurring and coordinated jerking movements involving both sides of the body as well as rhythmic contractions of the affected muscle groups and violent and extreme gross motor movements. I’ve had the misfortune of witnessing a tonic-clonic seizure with my daughter. She was literally vibrating across the bed with the convulsive gross motor involvement.

Complex Seizures – Involve involuntary but possibly coordinated movement such as lip smacking, chewing and abnormal oral motor activity. With my daughter I called these “birdie seizures”. The oral motor involvement she exhibited involved repeatedly opening and closing her mouth, bringing to mind a baby bird in a nest waiting for food.

Myoclonic Seizures – Characterized by sporadic jerking movements, usually involving both sides of the body, that may progress to violent gross motor convulsive movements.

Partial (focal) Seizures are confined to one part of the brain and may be simple or complex. Partial (focal) seizures result from electrical impulses from one part of the brain and are usually a motor or sensory seizure that is restricted to one side of the body. The individual remains conscious. However, if the seizure progresses to a more generalized seizure, a loss of consciousness will occur.

Petit mal (absence) Seizures – Also known as Absence Seizures with this type of seizure a child may appear to be “staring off into space”, and will be unresponsive to stimulation or their environment. I’ll never forget the “vacant stare” my daughter exhibited the first time I saw one of these seizures. It was obvious, even to me, that something was wrong. I had never witnessed such a seizure. These seizures don’t pose the same hazard some seizures do, but they can put a child at risk of aspiration if they occur while a child is eating.

Fever (febrile) Convulsions- Febrile seizures are convulsions brought on by a fever in infants and small children. During the seizure a child may lose consciousness accompanied by tremors or shaking. A majority of febrile seizures are harmless and there is no evidence to suggest that they cause brain damage. However, children who have experienced febrile seizures that are lengthy or that recur within 24 hours or children with cerebral palsy are at greater risk of developing epilepsy.
The National Institute of Neurological Disorders and Stroke (NINDS) provides a comprehensive online fact sheet on Febrile Seizures, provides a detailed and informative description of this type of seizure as well as information on diagnosis and treatment.

Simple Partial Seizures - Cause muscle twitching, chewing movement and numbness or tingling. Partial complex seizures- Are characterized by a brief loss of consciousness, behavioral, emotional symptoms, loss of memory and automatisms. Temporal lobe and frontal lobe seizures are often in this category.

Diagnosis

EEG – Your child’s neurologist will probably want to do an Electroencephalogram (EEG) if they suspect seizure activity. Although EEGs are often helpful in diagnosing some types of seizures, it may not detect all. EEG’s are typically performed in the hospital’s sleep clinic and involve placing electrodes on the child’s scalp

Brain Scans and MRI – The neurologist may order a CAT scan or Magnetic Resonance Imaging (MRI) to be performed. Although these studies don’t show the electrical impulses, they may show lesions or other possible suspected causes of seizure activity.

Video EEG – This study is usually performed overnight at a hospital’s sleep clinic. It involves a video camera and constant EEG monitoring though out the study. With the video and EEG combined, the physician can collate any suspected abnormal physical motor occurrences with the EEG, better identifying the seizure activity with the physical manifestations.

Document It

If you suspect your child may be experiencing seizures, keep a journal and document episodes or behaviors you suspect to be seizure related. If possible have some one video tape the episode. This will give your child’s pediatrician or neurologist insight into what you are witnessing, since it’s unlikely your child will experience a seizure during your 15-30 minutes visit with the physician.

In the case of documentation, note duration of the episode, did you child becomecyanotic (turn blue) or have blue lips which would indicate they weren’t breathing properly, what was your child doing at the time, note any abnormal behaviors your child may have exhibited that made you suspect the behavior as seizure activity.

If your child already has a diagnosis of seizure and you don’t feel that their current medication is managing their seizures effectively, again, keep a journal of any suspected break through seizure activity you may see. There are many medications and combinations of medications that can be used for seizure control. If the seizures are adversely impacting your child’s quality of life, don’t give up. Persevere and continue to question your child’s physicians until you find the right medication or combination of medications that offers a better level of control. In my daughter’s case, I was told, considering the severity of her cerebral injury, she would never be seizure free, and that she most likely experienced silent seizures even during sleep. After birth she was prescribed an anticonvulsant which seemed to do little to control the seizures. It just seemed to “zone her out.” This was not acceptable to me and I persisted with the neurologists until they changed her medication and we found a combination that proved effective, at least during her waking hours, without the side effects that she seemed to experience with her initial medication. I was amazed at her new level of awareness after the change. To this day that same combination of medications has continued to provide an optimum level of control. Never give up!

Treatments and Medications

• Protect a person from harm during a seizure. One of the complicated risks of seizures is that further damage can occur in the brain with severe seizures. The individual can also be hurt while falling or during spastic episodes resulting from grand mal seizures.
• Anticonvulsant medications are normally prescribed in the management of a seizure disorder. Tegretol, Phenobarbital, Dilantin, Klonopin, Valium and Topamax are several examples of medications that may be prescribed.
• Vagus Nerve Stimulation Therapy – This therapy is relatively new and involves a surgically implanted battery, with leads threaded under the skin and attached to the vagus nerve. Vagus Nerve Stimulation involves a device which sends short bursts of electrical energy into the brain via the vagus nerve.
• Ketogenic Diet – This form of therapy involves a diet high in fats and low in carbohydrates and makes the body burn fat for energy instead of glucose. This form of therapy has been proven effective in some children in the prevention of seizures.

Side Effects

Every medication involves side effects. Some children may tolerate one medication but another child may experience intolerance or contradictions with the same medication. In my daughter’s case, I was in a position where I had to decide what side effects were acceptable and which weren’t. With the initial anticonvulsant, my daughter seemed unresponsive to her environment and “disconnected” from the world. That was not acceptable to me, but the new medication offered its array of side effects also. I remember researching the new medication in my boss’s Physician’s Desk Reference (PDR) and calling up the neurologist almost frantic!

Our neurologist was exceptional, and we communicated with ease. When I told him of my research in the PDR and my concerns (I think I heard a slight groan) he patiently explained to me that yes, the side effects and contradictions I was reading were cause for concern but the PDR had to list every incident of contradiction so the ratio seemed out of proportion. In most cases, the incidents were more a rarity then the norm. He assured me of the safety of the new medication and told me what would constitute severe side effects or contradictions that would warrant intervention. I thanked him for his time and for taking my call. My baby was a part of my world for the first time and was showing a new level of awareness. That went far in outweighing the unavoidable side effects and possible contradictions that came with the new medication. This isn’t meant to discourage a parent’s research, just the opposite. Educate yourself on all medications. That’s the only way you make an INFORMED DECISION.

There is much research being conducted and many clinical trials occurring in the field of neurology and seizure management. Many individuals are living seizure free as a result of the advances made in Neurologic medicine.

Questions to Ask Physician

• You may have a thousand questions in your head about your child’s possible seizures, medications, or management, but you won’t think of half of them during your appointment with your child’s physician or neurologist. Write them down as you think of them!
• Ask your physician what side effects to expect with any medication and what contradictions you need to be aware of and what to do in the case of a serious adverse side effect.
• Should your child take the medication with or without food? Make your child’s neurologist aware of any other medications your child may be on, whether it’s seizure-related medication or not.
• Make sure you’re aware of any blood work or lab work that needs to be done and the frequency. Many anticonvulsants require blood work to monitor the levels of the medication in the blood and to monitor possible kidney and liver function in relation to the medication.
• Some children experience seizures that may be triggered by different environmental or dietary factors. Ask your physician if there are any environmental factors or dietary issues that you need to be aware of.

Cerebral Palsy News: Spastic Cerebral Palsy-Facts, Treatments, and Outcomes

By Lee Vanderloop

Spastic cerebral palsy is the most common form of cerebral palsy, occurring in 50-75% of all cases. People with spastic cerebral palsy have too much muscle tone or tightness, a condition called hypertonia. Their movements are stiff and jerky, especially in the legs, arms, and back.

Sometimes an infant born with weak muscle tone, called hypotonia, will progress to hypertonia after the first 2 to 3 months of life. Children with cerebral palsy may exhibit unusual posturing or favor one side of the body when they move.

Up to 80% of all people with cerebral palsy suffer from some degree of spasticity. Spastic cerebral palsy is further categorized by what parts of the body are affected. In spastic diplegia, the main effect is found in both legs. Spastic hemiplegia involves one side of the person’s body. Spastic quadriplegia affects a person’s whole body (face, trunk, legs, and arms).

A person can have spastic cerebral palsy so mild that walking can simply look awkward, or be so severe that the use of a wheelchair is required.

Causes of Spastic Cerebral Palsy

According to the National Institutes of Health, four types of brain damage cause the characteristic symptoms of cerebral palsy:

• Damage to the white matter of the brain (periventricular leukomalacia [PVL]).The white matter of the brain is responsible for transmitting signals inside the brain and to the rest of the body. Periventricular leukomalacia describes a type of damage that looks like tiny holes in the white matter of an infant’s brain. These gaps in brain tissue interfere with the normal transmission of signals. There are a number of events that can cause PVL, including maternal or fetal infection. Researchers have also identified a period of selective vulnerability in the developing fetal brain between 26 and 34 weeks of gestation. During this time, periventricular white matter is particularly sensitive to injury.

• Abnormal development of the brain (cerebral dysgenesis). Any interruption of the normal process of brain growth during fetal development can cause brain malformations that interfere with the transmission of brain signals. The fetal brain is particularly vulnerable during the first 20 weeks of development.  Mutations in the genes that control brain development during this early period can keep the brain from developing normally. Infections, fevers, trauma, or other conditions that cause unhealthy conditions in the womb also put an unborn baby’s nervous system at risk.

• Bleeding in the brain (intracranial hemorrhage). Intracranial hemorrhage involves bleeding inside the brain caused by blocked or broken blood vessels. A common cause of this kind of damage is fetal stroke. Some babies suffer a stroke while still in the womb because of blood clots in the placenta that block blood flow. Other types of fetal stroke are caused by malformed or weak blood vessels in the brain or by blood-clotting abnormalities. Maternal high blood pressure (hypertension) is a common medical disorder during pregnancy that has been known to cause fetal stroke. Maternal infection, especially pelvic inflammatory disease, has also been shown to increase the risk of fetal stroke.

• Brain damage caused by a lack of oxygen in the brain (hypoxic-ischemic encephalopathy or intrapartum asphyxia). Asphyxia, a lack of oxygen in the brain caused by an interruption in breathing or poor oxygen supply, is common in babies due to the stress of labor and delivery. But even though a newborn’s blood is equipped to compensate for short-term low levels of oxygen, if the supply of oxygen is cut off or reduced for lengthy periods, an infant can develop a type of brain damage called hypoxic-ischemic encephalopathy, which destroys tissue in the cerebral motor cortex and other areas of the brain.    This kind of damage can also be caused by severely low maternal blood pressure, rupture of the uterus, detachment of the placenta, or problems involving the umbilical cord.

How Movement is Affected

The type of brain damage that leads to cerebral palsy affects movement. Movement is governed by muscle tone, which is the continuous and passive amount of tension in a muscle that allows us to change or keep certain postures.

Healthy muscles work in groups. For example, when you bend your arm, the group of muscles on the front of your arm contract and the muscles on the back of your arm relax, which is what allows the bend to occur. Except in deep sleep, our muscles are in a constant state of active or passive tension, which allows us to do things like sit up, raise our heads, or stand.

Our brain sends out signals to muscles telling which ones to contract and which to extend to make our movements smooth and controlled. When any movement occurs, there are two sets of muscles working around a joint. Normally, the muscles on one side of the joint must relax so that the muscles on the other side can contract. In people with spastic cerebral palsy, the brain activates muscles at the same time, causing muscle groups to work against each other. The result is stiff, jerky movements.

Symptoms of Spastic Cerebral Palsy

Brain damage can occur before an infant is born, during labor and delivery, or when a child is older as the result of illness, accident, or injury. If the damage occurred before or during birth, an infant might have low APGAR scores, floppy muscle tone, poor color, weak breathing, the inability to suck, and development of seizures. In less severe cases, brain injury may not be obvious until the child fails to meet developmental milestones. In most cases, children with cerebral palsy are diagnosed by age three. Your child’s physician may order a brain scan or MRI for the diagnosis of cerebral palsy. This study may show lesions or other possible suspected causes of spastic cerebral palsy.

Following are some symptoms of spastic cerebral palsy in children:

Contractures-Contractures are “frozen joints,” and occur when a limb cannot be stretched or moved (when another person tries to moves it about its joint). Contractures may develop because the muscles were shortened or wasted away (atrophy), or from the development of scar tissue (fibrosis) formed over the joints.

Clonus -Clonus is a movement characterized by rapid, alternate contractions and relaxations of a muscle. Clonus is frequently observed in conditions such as spasticity and certain seizure disorders. A child with spastic cerebral palsy may experience episodes of clonus when trying to walk or navigating stairs. Clonus may cause the child’s foot to move up and down uncontrollably or shake erratically. In the case of clonus involving the arms, an attempt at controlled movement may trigger rapid, violent tremors or shaking of the arms and hands, sometimes leading to violent scissoring of the arms, possibly banging of the fists together.

Dystonia-Dystonia is a movement disorder characterized by lasting muscle tightening or contractions. The contractions result in repeated twisting or writhing movements and unusual postures or positioning that the person with dystonia cannot control. This disorder may be limited to specific muscle groups and may result from the use of certain medications.

Exaggerated deep tendon reflexes-Knee jerk and other reflexes may be exaggerated.

Exaggerated startle reflexes and hypersensitivity-Infants may seem particularly sensitive to their environment, such as noise and light. They may seem especially sensitive to touch, startling easily and becoming fussy when stroked or held.

Hip dysplasia and dislocation-Hip dysplasia and dislocation is a common feature of cerebral palsy. The hip joint is normal at birth but the spastic muscle imbalance and lack of weight bearing leads to the development of progressive structural changes around the hip joint. These deformities contribute to hip dysplasia and dislocation. The consequences of a hip dislocation include difficulty with toileting and hygiene and result in problems with sitting.

Myoclonus-Myoclonus is a neurological movement disorder characterized by brief, involuntary, twitching or “shock-like” contractions of a muscle or muscle group. Depending on its cause, the muscle jerks can occur repeatedly or infrequently. They also may tend to occur only during specific circumstances. The muscle jerks can affect any body region or regions.

Muscle spasms or scissoring-Involuntary crossing of the legs or arms.

Categories of Spastic Cerebral Palsy

Spastic Diplegia-Spastic Diplegia is spastic cerebral palsy that may involve both legs, causing difficulty with walking due to tight muscles in the hips and legs causing legs to turn inward and cross at the knees (scissoring).

Spastic Hemiplegia-Spastic hemiplegia affects one side of the body. In the brain, one hemisphere (side) controls the opposite side of the body. So, if the left side of the brain experiences damage, the symptoms will appear on the right side of the body and vise versa.

Spastic Quadriplegia-Spastic quadriplegia is spastic cerebral palsy that involves all four limbs and the trunk, often along with the muscles controlling the mouth and tongue and also those controlled by the autonomic system responsible for swallowing, gastric emptying, and intestinal motility. This is the most severe form of spastic cerebral palsy.

Treatments

Treatment for spastic cerebral palsy focuses on controlling excess tone and spasticity by means of medication, surgery or spinal cord stimulation, alleviating pain, and providing regular physical therapy. Failure to control excess tone and spasticity to the extent possible can lead to contractures, scoliosis, and hip dysplasia, and it may severely impact quality of life.

Common Medications

• Benzodiazepines–A class of medications that act upon the central nervous system to reduce communication between certain neurons, lowering the level of activity in the brain. Benzodiazepines are muscle relaxants such as diazepam, oral baclofen, and dantrolene and are frequently the first line of treatment in managing movement disorders.
• Intrathecal baclofen–Approved by the Food and Drug Administration (FDA) in 1996 for treatment of cerebral palsy, this therapy is becoming the common choice of treatment in movement disorders that do not respond well to other forms of treatment. This form of therapy uses an implanted pump device to deliver baclofen (muscle relaxant) into the spinal cord. This form of therapy is most appropriate for children with severe hypertonia and uncontrolled movement disorders throughout the body.

Surgery

• Orthopedic surgery is often recommended when spasticity and stiffness are severe enough to make walking and moving difficult or painful. Commonly, surgery involves lengthening muscles and tendons that are proportionately too short. Orthopedists generally time surgeries to coincide with a specific stage of the child’s physical development.

• Spasticity in the upper leg muscles, which causes a “scissor pattern” walk, is a major obstacle to normal gait. The optimal age to correct this spasticity is 2 to 4 years of age with adduction release surgery. On the other hand, the best time to perform surgery to lengthen the hamstrings or Achilles tendon is 7 to 8 years of age. If adduction release surgery is delayed so that it can be performed at the same time as hamstring lengthening, the child will have learned to compensate for spasticity in the adductors. By the time the hamstring surgery is performed, the child’s abnormal gait pattern could be so ingrained that it might not be easily corrected. With shorter recovery times and new, less invasive surgical techniques, doctors can schedule surgeries at times that take advantage of a child’s age and developmental abilities for the best possible result.

• Selective dorsal rhizotomy (SDR) is a surgical procedure recommended only for cases of severe spasticity when all of the more conservative treatments have proven ineffective. In this procedure, surgeons locate and selectively sever over-activated nerves at the base of the spinal cord to reduce spasticity in the legs.

Spinal Cord Stimulation

Spinal Cord Stimulation was developed in the 1980s to treat spinal cord injury and other neurological conditions involving motor neurons. This procedure involves an implanted electrode, which selectively stimulates nerves at the base of the spinal cord to inhibit and decrease nerve activity. The effectiveness of spinal cord stimulation for the treatment of cerebral palsy has yet to be proven in clinical studies. It is considered only when other conservative or surgical treatments have been unsuccessful at relaxing muscles or relieving pain.

Deep Brain Stimulation

Deep Brain Stimulation involves placing thin wires through tiny holes in the skull into the area of the brain that controls movements. The leads are then connected to a device called a neurostimulator. The device sends electrical pulses or signals to areas deep within the brain. These signals block the abnormal nerve signals causing the symptoms of dystonia. Research hospitals such as Children’s Hospital of Pittsburgh and theUniversity of California, San Francisco have reported benefits for children with cerebral palsy from deep brain stimulation.

Botox Injections

A growing body of research supports the use of Botox injections for easing spasticity in children with cerebral palsy. However, the FDA has not approved Botox for this purpose because of possible dangerous side effects. A board certified neurosurgeon should administer this treatment, which gives only temporary relief.

Outcomes

The prognosis for those with spastic cerebral palsy depends on the severity of the spasticity and the nature and severity of the brain damage. Spastic cerebral palsy does not always involve seizures or profound disabilities, developmental delays, or learning disabilities. While one child with severe spastic cerebral palsy might be developmentally delayed and unable to walk and need lifelong care, another with mild cerebral palsy might only have a few awkward movements, exhibit no developmental delays, and require no special assistance.

The degree of spasticity can vary from mild muscle stiffness to severe, painful, and uncontrollable muscle spasms, and can interfere with rehabilitation. It can often interfere with daily activities and may also result in feeding, swallowing, speech and oral motor difficulties, as well as disrupted or increased muscle tone of the gastric and intestinal muscles, putting a child at risk of reflux (Gastro esophageal reflux disease – GERD) and delayed gastric emptying. Unchecked, spasticity can severely impact a child’s physical and cognitive development.

Some children may require only augmentative communication and adaptive equipment to be active and functional, while others may require a lifetime of therapy, surgeries, and medications. Children with severe spastic cerebral palsy may also be at increased risk of aspiration pneumonia and scoliosis. Depending on the severity, a child may also be diagnosed with “failure to thrive” because of the high amount of energy and calories the body uses in cases of chronic spasticity.

Spastic cerebral palsy provides life-long challenges. But with the help of medications, therapy and continuing advancements in medical care, it can be managed to provide the fullest life possible. For more information and support for families dealing with cerebral palsy, go to www.cpfamilynetwork.org.

Therapy Options for Children with Tactile Sensitivity

By Lee Vander Loop
CP Family Network Editor

Many children with cerebral palsy experience some type of sensory impairment. A study by a Spanish university concluded that children with CP showed reduced sensitivity to non-painful stimuli but enhanced sensitivity to painful stimuli compared to healthy individuals. What’s behind these sensitivities and what can parents and caregivers do to help?

The Anatomy of Our Senses

The portion of the brain that responds to touch and other environmental stimulation is called the somatosensory cortex.  This system is responsible for multiple sensations including light touch, pain, pressure, and temperature. The somatosensory cortex also assesses the size, shape, and texture of objects based on their feel and helps judge body position using sensory input from the joints, muscle and skin.

Many times, cerebral palsy results in damage to this region of the brain, so it’s not surprising that many children with cerebral palsy experience sensory challenges and difficulties. Data suggest that altered somatosensory brain processing in people with cerebral palsy may cause overstimulation of the portion of the brain.  This can result in inappropriate responses to everyday experiences, such as physical affection, play, bathing and other activities.

Does Your Child Have Tactile Sensitivity?

Every child is sensitive from time to time, but frequent negative reactions to touch may indicate a problem. According to the Family Education Network, signs of tactile sensitivity in children include but are not limited to:

• Becoming upset about being dirty
• Difficulty feeling comfortable in clothing
• Anxiety about walking barefoot
• Avoiding touch
• Unusual sensitivity to pain
• Strong dislike of grooming activities such as nail clipping and hair washing

Children with sensitivities are often irritable and don’t adjust well to changes or new situations. They spend so much energy dealing with the many unpleasant perceptions and sensations they face on a daily basis, they don’t have much left to deal with anything else.

Helping Your Child Cope

If you suspect your child may be experiencing sensory processing difficulties, ask your pediatrician or therapist for an evaluation. If left untreated, tactile sensitivity can seriously interfere with a child’s quality of life.

Children suffering from environmental and tactile sensitivity often benefit from occupational therapy. An occupational therapist will work with a child in a sensory-rich environment to help them learn coping strategies that will allow them to behave in a functional manner in daily life.  Occupational therapy for children is designed to be fun but challenging, with the end goal that the child can eat, play with friends, attend school, and participate in other activities that were difficult before therapy.

At Home Activities

There are many activities you can do with your child at home to help them become more comfortable with “unpleasant” sensations. Your child’s occupational therapist will recommend activities appropriate for your child’s unique situation. A few of the most common at-home therapeutic activities are mentioned here.

The Wilbarger Brushing Protocol

This popular therapy relies on the application of firm and rapid pressure to the arms, hands, back, legs and feet with a specific plastic surgical scrub brush. This is followed by gentle joint compressions to the shoulders, elbows, wrists, hips, ankles and sometimes, fingers and feet. A knowledgeable therapist should tell you if this is an appropriate therapy for your child and show you how to conduct it properly.

Deep Pressure/Weighted Products

There are many wearable weighted products on the market designed to provide deep pressure to children suffering from tactile sensitivity. The deep pressure provides important sensory information to the joints and muscles that helps calm sensitive children. Weighted products should be used under the supervision of a pediatrician or therapist.

Messy Play

Many children with tactile sensitivity have an aversion to touching things of a certain texture or “messy” things. Therapists often encourage children to explore these items through play. Messy play can involve play dough, glue, finger paint, sand or other hands-on materials. Ease into messy play slowly. If your child is fearful of the materials, encourage play in a less threatening way. For example, therapists recommend you allow your child to use your hands to start touching the material. Allow him to put objects in and out of the messy materials. As your child becomes more comfortable with the material, slowly encourage him to explore it more. As with any therapy, you should consult your child’s doctor or therapist before beginning messy play at home.

Conclusion

Tactile sensitivity in children with cerebral palsy can have a huge impact on their quality of life. Supervised therapy should be started at an early age to help a child learn to overcome and cope with his negative reactions to daily activities. For more information about tactile sensitivity, talk to your child’s doctor and check out the additional resources listed below.

Additional Resources

Tactile Sensitivity in Children

Tactile Defensiveness… So THAT’S Why He Acts That Way!

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The Benefits of Personal Writing for Children with Cerebral Palsy

By Drew Dillard

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As so many have learned first-hand, writing is one of the greatest tools for healing and personal growth we have. From an early age, children of all abilities need to be shown different ways to process and express their feelings, fears, hopes and triumphs. Personal writing, whether done in a private journal, a public blog or some combination of both, provides a valuable outlet for children with cerebral palsy to grow, express and heal.

The Benefits of Personal Writing

From the moment we sense they might grasp the concept, we begin teaching young children to write because we understand what an important tool it is to functioning as a human being. We know what an important discipline it is to brain development and communication.

Journal writing, the process of recording one’s personal thoughts and feelings, can help your child process difficult feelings, develop coping skills and solve personal issues.  It helps a child purge negative feelings and emotions and gives them a much-needed tool they can use to process the unforeseen circumstances and inevitable confusions we all face.

Getting Started

As with anything, the most effective way to teach “journaling” to a young child is by interactive modeling. At a consistent time each day when you think your child might be most focused, spend a little time reviewing recent activities by talking about them, reviewing photographs and drawing pictures. Write at least some of it down (or type it) and read aloud as you write. Let your child participate and provide feedback about what he or she thought was important about that day. Save the results in a notebook or on a computer page so they begin to grasp the lineage and evolution of events. Encourage them to draw pictures of not only what they did (playing in the park, a visit to the doctor), but also how they felt about it. It may be as simple as a smiley face or a frowny face.

Stimulating the Mind

As they develop the ability to write on their own, keep this practice up. Have them add at least one written line to each daily entry. You may want to prompt them with topics or questions you feel pertinent to the experience. But if they prefer their own tangent, let them go with it. After all, it’s their mind we’re trying to unlock. You may have introduced journaling as a simple documentation of a day’s activities, but with a little direction a child can foster the ability to process thoughts and feelings, work through problems, develop intuition and gain insight. It’s a tool that will benefit them for the rest of their lives.

Once a child can write longer pieces, whether manually, electronically or with the help of adaptive equipment, suggest exercises aimed at broadening perspective such as writing “a letter to your future self,” or “writing dialogue by assuming the role of the other person.”

Blogging

Blogging started in the 1990’s with the advent of internet publishing tools, but really took off in the mid-2000’s with the popularity of MySpace. As of October 2012 there were around 77 million Tumblr and 56.6 million WordPress blogs. Today, Blogger, owned and operated by Google, is the world’s most popular blogging site.

People maintain blogs for many reasons, but mothers blogging about the trials and tribulations of raising children seems particularly prevalent. There’s a good reason for that. Blogging allows parents a space to vent and process feelings; to share and communicate with other parents, finding answers to tough questions and fostering a support network. If the parent of a special needs kid isn’t writing their own blog, chances are they are at least monitoring others to help gain insight and perspective on what is often a difficult journey.

If you are blogging about your special needs kid and you haven’t done so already, let them do the occasional guest spot. You don’t have to share every second of your blogging with them (and probably shouldn’t), but let them understand what it is you’re doing and why it’s important to you. If they seem interested, maybe start a separate co-blog with them.

As they get older they may want to maintain a blog of their own. There are many worthy blogs written by tweens and teens about their personal experiences with cerebral palsy. Recent studies have shown that adolescents blog to maintain friendships and engage in positive discussions of everyday teenage life. For young people whose physical limitations hinder their being out in the world as often as others, blogging is a great way for to them to feel less alone and more connected.

It should go without saying, but before your child is allowed to be on the internet, especially unsupervised, establish a firm set of rules and guidelines. Filters can be installed on computers that will block some, but never all, access to dangerous internet content. Subscribe to an ISP (Internet Service Provider) that offers parental controls, and use them. You can also install software that will filter what your teen can post online, obstructing personal information such as phone numbers.

Regarding content of your child’s blog, obviously there is no litmus test for what should be shared with the world and what should be kept to the confines of one’s personal journal.  As a parent and guardian of a young person, it is your responsibility to be the gatekeeper of what you believe acceptable for your child to “publish.”

Technology

My personal feeling is that pen to paper is the most effective way to connect with your inner self, but this does not always come easy to children with mobility issues who may benefit from electronic alternatives.

It seems that a day doesn’t go by without the announcement of some new piece of must-have digital technology. Children with cerebral palsy have not been left out of this revolution. Children with communication difficulties, whether purely physical or a combination of physical and intellectual, have so many more tools available to them than kids of even 10 years ago.  Specially designed laptops and tablets allow for computer access almost anywhere. From adaptive keyboards to voice-synthesizer software, a child who struggles to communicate clearly, or even speak at all, can be understood by others.

Through journaling, a child with cerebral palsy will discover an all-accepting, nonjudgmental friend and some of the best (and cheapest!) therapy they will ever get.

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